Years of research and appointments, tests and treatments, had led to the formation of a medical team in Virginia, where Rebecca Tillett was coaching women’s basketball and her son was suffering from a complicated and misunderstood condition.
They had seen a pediatrician, neurologist, immunologist, psychiatrist, psychologist and endocrinologist. They had a diagnosis and plan of treatment.
Then Tillett took Longwood to the NCAA Tournament and doors opened, leading to a coaching offer from ºüÀêÊÓƵ University. Jack Tillett’s ability to get top-notch care was a key component of those discussions, and the move has given Rebecca Tillett a chance to teach another community about pediatric acute-onset neuropsychiatric disorders associated with streptococcus (PANDAS).
Jack and the family have been dealing with the disorder for more than six years. The intense symptoms of fatigue, anxiety and obsessive compulsive disorder have kept Jack from attending high school in person. Finding answers has been as perplexing as the name.
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When the Billikens played at home last week, SLU sponsored its second PANDAS awareness game, inviting patients and their families and putting a face on something about which little is known.
“The first time we found it was through Google,†Rebecca Tillett said. “Why would my child have sudden onset OCD? I searched it and brought it to our pediatrician. We went through all of the paths because there are so many specialties involved in supporting these patients. They say it can take eight doctors before you get a diagnosis. We’ve had three confirm it.â€
When Tillett isn’t working on a practice plan or game preparation, she is likely to be reading about PANDAS or working toward another step in treatment along with her husband, Brett. Long hours at the office, game travel and recruiting trips have added to the difficulty.
It’s been an ongoing process since 2017, when Jack suddenly was eating nothing more than a single carton of yogurt per day. He told his mother that he couldn’t eat more than his body would let him during one particular hour in the day.
That was the beginning of the medical quest. PANDAS is triggered by a strep infection, and tests showed that Jack had experienced such an infection. A related condition known as PANS is unrelated to strep. PANDAS can lead to OCD, tics, anxiety and other debilitating symptoms, such as difficulty leaving the house and completing schoolwork.
“One challenge is there’s not much knowledge or understanding of how to support someone,†Tillett said. “That’s part of the reason we raise awareness, and now the people who were at the arena that night have an awareness. Our athletic department and the doctors have really supported us with help and connecting us with those who specialize in this area.â€
However, there are few who specialize in treating PANDAS. Tillett has done her part. She keeps up on the latest developments in research. She knows which universities are studying the condition and has participated in online workshops offered by Stanford. She attended a conference in Washington, D.C., to hear physicians talk about PANDAS.
“My staff jokes that I could have a degree in it,†Tillett said. “That’s a fair assessment — a master’s degree in PANDAS. There have been many, many nights falling asleep reading research articles. I feel strongly about advocating and doing so in my public role.â€
Tillett has another relative who has been diagnosed with the same condition but with fewer significant symptoms. Jack’s are bad enough that he has attended high school classes in person for only one semester and is attempting to graduate through online courses while going through a particularly tough phase. He wanted to talk about his condition but said it would have to wait until he is feeling better.
He has undergone an array of treatments Tillett describes as “the kitchen sink.†It started with antibiotics that helped his initial issues dissipate. As they returned repeatedly, doctors tried more intense and invasive regimens.
He has maintained a course of monthly intravenous immunoglobulin therapies in which he receives healthy plasma from others. The most effective treatment has been plasmapheresis, a process where plasma is separated from blood before the blood is reintroduced to the body mixed with albumin solution.
Plasmapheresis, which requires the surgical implant of a port for two weeks, gave Jack six months free of symptoms after the first treatment and a year after the second. But he has struggled since the spring and is scheduled for another round early next year.
“He was a really good travel soccer and basketball player,†Tillett said. “It’s been a long time since he felt good enough to do exercise or just have the enjoyment of going out to do something. Where’s the enjoyment of life? The social interaction? This is a kid that was vibrantly involved in everything and then wasn’t.â€
Jack, who is 19, attended many SLU games in Tillett’s first season as coach after undergoing plasmapheresis in March 2022. Those were chances to see his sister, Isabel, who is on the team. His symptoms worsened again earlier this year. He had been on track to graduate in May 2024, but that might have to wait a bit longer.
The Tilletts added a dog to the family in May, and she has bonded with Jack. It has been suggested that training as a service dog could be an option. She is a companion Jack often doesn’t have aside from communicating with his parents at their places of work.
“We’re very connected throughout the day in terms of texting and what he might need,†Tillett said.
Jack did travel to Hawaii last month when SLU played in an event. He was unable to get to the first two games but willed his way to the third.
Patients with PANDAS and PANS attended last week’s game. Those who were able visited the SLU locker room to meet players. The arena provided headphones for those with sensory issues. Some parents contacted Tillett to offer thanks but were unable to bring their children because of the condition.
Meanwhile, the day-to-day reality of managing and persevering is an ongoing process for Jack, his parents and siblings.
“I think he’s a tired fighter right now,†Tillett said. “The next treatment is on the horizon. We all want to know what will happen long term. He wants to graduate, to go to college, to move out of his parents’ house. He needs good treatment and care. We want him to have a life.â€